More on KentOnline
More on KentOnline
A boy with a life-limiting illness has found a new way to communicate thanks to a generous donation towards some eye-catching new technology.
John Junior (JJ), 11, is non-verbal and cared for by hospice charity ellenor in Gravesend.
He suffers from Cerebral x-linked adrenoleukodystrophy (ALD), a rare genetic disease that affects the nervous system and the adrenal glands.
Children with this form experience learning and behavioural problems that usually begin between the ages of 4 and 10.
Before JJ was diagnosed with the condition, he was an able young boy who attended a mainstream school and could access equipment with little help.
Once diagnosed, he slowly lost the ability to see, walk, and talk, and became entirely dependant on his family and carers.
Lockdown has meant many of us have been unable to leave the house, socialise or carry out other sorts of everyday tasks for large spells of time as we adjust to the "new normal".
But for a terminally ill and disabled child like JJ – who cannot live independently – this is very much the same as before.
However, this is now changing thanks to some new assistive technology, provided by the Lifelites project, which is helping JJ to communicate with his friends and family.
JJ's carer at the hospice in Northfleet said: "Being able to use the eyegaze with him has given him the chance to do a task independently without any help from anyone else.
"He is able to move his eyes around the screen to create pictures or select an image he wants.
"We have always been unsure how much JJ can actually see, but when using the eye gaze, his eye movement increases and you can really tell that he is able to see what he is doing on the screen.”
Eyegaze allows life-limited children to take greater control of their own lives simply by looking at a screen.
"When using the eyegaze, his eye movement increases, and we can really tell that he is able to see by what he is doing on screen"
The system works via a camera connected to a computer or tablet which you control with your eyes.
It can be used to assist face-to-face communication, to send text or emails, or simply play games.
The technology was provided by the FB Coales Family Trust which has been helping support the small charity Lifelites by offering a donation towards its life-changing assistive technology, Eyegaze.
Lifelites has been donating life-changing packages of technology for 20 years.
It aims to provide on-going support through new inventions to ensure that disabled and life-limited children have a chance to escape the confines of their conditions.
The charity says its services are becoming even more significant in these difficult and changing times to escape isolation.
Simone Enefer-Doy, chief executive of Lifelites, said: “We are incredibly grateful for the support from FB Coales Family Trust for our work with ellenor children’s hospice.
"With our donated assistive technology, these life-limited and disabled children will receive the opportunity to play, communicate, and control something themselves.
"For many of them, it is the first time that they will be able to play with their brothers and sisters and say ‘I love you’ to their parents."
ellenor supports children across North and West Kent and the London Borough of Bexley.
